The Systems and Policy Research Network (SPRNetwork) is proud to announce Lauren Agoratus as the recipient of the 2026 Pediatric Complex Care Lived Experience Partner Lifetime Achievement Award. This honor recognizes Lauren’s extraordinary career as a family leader, policy advocate, educator, and trusted partner. For more than three decades, she has transformed lived experience into meaningful change, helping families navigate health care, education, and disability systems while advancing policies and partnerships that improve care for children and families nationwide.

About the Award

The Pediatric Complex Care Lifetime Achievement Award is supported by the Systems & Policy Research Network, Family Voices, the Academic Pediatrics Association Complex Care and Disability Special Interest Group, and the Children’s Hospital Association.

From One Family’s Experience to a Lifetime of Advocacy

Lauren Agoratus’s advocacy journey began with her daughter, Stephanie, who was born with life-threatening kidney disease and spent her first weeks in the neonatal intensive care unit. During Stephanie’s early years, Lauren navigated complex medical care, developmental delays, special education, and disability services while searching for the support her family needed. An early intervention program connected her to Parent-to-Parent and Family Voices, providing both family support and a pathway into advocacy.

What started with one family’s experiences quickly grew into a lifelong commitment to helping others. Lauren became one of New Jersey’s earliest Family Voices leaders, eventually serving as the New Jersey Family Voices Coordinator at SPAN Parent Advocacy Network. She also helped establish a model that brought together Family Voices, the Parent Training and Information Center, and Parent-to-Parent support within one organization, giving families a single place to access information, advocacy, and peer support.

Turning Experience into Action

Throughout her career, Lauren has consistently transformed the challenges her family experienced into practical tools and resources for others. After navigating lengthy hospitalizations and the transition home following her daughter’s kidney transplant, she developed resources to help families prepare for hospital stays and safely return home. Lauren shares her daughter’s medical journey here.

She created fact sheets on individualized health plans in schools, health care transition for teens, children’s mental health, and numerous other topics affecting children with special health care needs. She also developed the Healthcare Advocacy Across the Lifespan manual and has authored more than 160 articles that help families understand complex health care, education, and disability systems.

Lauren’s writing extends beyond developing resources. Colleagues describe her as someone who shares opportunities with others, frequently collaborating with partner organizations so more family voices and professional perspectives can reach families through publications and educational materials.

Improving Systems for Families

Lauren’s impact reaches well beyond individual families. She has played a key role in efforts to improve Medicaid, strengthen provider network adequacy, expand paid sick leave and paid family leave for families caring for children with disabilities and special health care needs, and improve equitable access to services for underserved communities. She has collected family stories, written testimony, developed policy comments, and advocated for changes that have strengthened services and supports for children with special health care needs throughout New Jersey.

“I became an advocate because I was tired of fighting both the medical and educational systems that were supposed to be helping my family. I didn’t want this to happen to other families. That’s how I got started.”

As a fluent Spanish speaker, Lauren has also advanced language access by writing policy comments and advocating for more equitable access to services for families whose primary language is not English. Her colleagues note that she has an exceptional understanding of both health care and education systems and the ways they intersect for children with disabilities and special health care needs.

Lauren’s expertise has made her a valued contributor to numerous state and national initiatives. She has served on advisory committees, research partnerships, and workgroups focused on children with medical complexity, health care transition, transplantation, mental health, family engagement, and quality improvement.

Her contributions include developing the Framework for Assessing Family Engagement, conducting the literature review for the Family Engagement in Systems Assessment Tool (FESAT), participating in the Nemours Children’s Health Medical Complexity Workgroup, serving on the SPRNetwork Advisory and Dissemination Committees as well as a family advisor for Emerging Investigators, and contributing to numerous federally funded projects.

A Lasting Legacy

Throughout every stage of her career, Lauren has remained focused on improving the experiences of families navigating complex systems. Her work has influenced policies, expanded access to care, strengthened family engagement in research and health care improvement, and provided practical resources that families continue to rely on every day.

Through her leadership, writing, policy expertise, and dedication to family partnership, Lauren Agoratus has made a lasting impact on children with medical complexity, their families, and the professionals and organizations that serve them. Her work continues to strengthen systems of care and empower families to become informed partners and effective advocates for their children.